Kendall had two appointments at the hospital last week. Wednesday we got caught up with our Epileptologist. He's been with us since the beginning and has always done a great job listening to me, signing off on services and supplies, and making sure Kendall sees the Dr.'s that she needs to see when she needs to see them. I have always liked the way he doesn't beat around the bush. He tells it like it is, and I respect that. (Actually our Neurologist in the Spasticity clinic does the same thing!) I truly think if we didn't start the Ketogenic Diet when we did, our outcome would have been much different. So, we have him to thank for that!
I'm happy to say the appointment went well. He's not terribly concerned with the startle seizures we see when Kendall wakes up or when she gets scared. He asked us to consider adding Clobazam to our Keppra routine...and I will consider it. He didn't pressure me about getting in for another VEEG, which made me relieved. We now see him every 6 months which also makes me happy!
On Thursday morning bright and early, we spent the morning in the Endocrine clinic. Catching up with our Diabetic Educators, nurses, and dietitians in there is always fun. They all dote on Kendall. They have seen her come a long long way too! Nobody can believe how big she is, and all comment on how amazingly she holds her head up and interacts with them. She has come a long, long, long way since that dreadful week in the ICU.
Our Endocrinologist crosses all his t's and dots all his i's. He asks about Justin and Kamden, and we talk about her development. He has always been on the Mitochondrial bandwagon, and this time he wanted to make sure I see our ophthalmologist to discuss the different ways Mito, not Diabetes, can affect her vision. Whatever. I got this buddy. And I'm pretty sure our pediatric ophthalmologist does too.
About two weeks ago, Kendall started having low blood sugars in the mornings. Like super low, 50's and 60's. He is convinced it is the Mito starting to show it's ugly teeth and changing the way her body absorbs her food. Of course, I silently worried about that all day. That evening I went to make some changes to her pump. After I did, I looked down and realized the AM and PM was reversed on it. Totally my fault after changing her last battery (though I do remember getting a letter from Animus about a glitch after daylight savings time.) Anyway, I then realized that instead of her having lows in the late afternoon, she was probably having those lows in the early hours of the morning....I shutter to think how low they dropped without food and while she was sleeping. Close call for sure.
Anyway, her HA1C is a 7.1...and we go back in another 3 months which is standard for Diabetes.
Our appointments continue to spread out, and that's a good thing. I'm grateful for great Dr.'s and a fun facility. Our specialty clinic moved next door to the new Dodson Center at Cook Children's. So our appointment days are becoming something to look forward to! Kendall loves the Pirate's Cove because her wheelchair fits through it and the wheelchair friendly playground. Mommy loves the handicap parking on the lower floor in the garage, and the Chic Fil A!
Mitochondrial Disease Awareness Week
1 day ago